A Review of Stroke Books, and The 3 Things I Didn't Have When I Had My Stroke

I finished all three and very different books about strokes as promised: a brain stem stroke, an ischemic stroke, and a hemorrhagic stroke. Here are my reviews, with a few thoughts at the end on what I was missing when I had my stroke.


1. The Calm Before the Storm: A Stroke Survivor's Story by Delanie Stephenson

Delanie's major concern when she had a brain stem stroke at 33 in Virginia was, who would take care of her two young kids before unconsciousness set in with her words, Then everything went dark. Her sister had a stroke, too, a hemorrhagic one, so the strokes were probably hereditary rather than coincidence. She uses religious undertones all through the book in prayers to God, invoking Him for help with the loss of her ability to walk and speak. Delanie has humor in the book as well as she described her embarrassing moments in graphic detail. There was much support, including her mom, her sister-in-law, friends and, of course, Curtis, her husband. She was in rehab for months and the doctors called her "a miracle." She suffers with PBA (pseudobulbar affect when one cries and laughs at inappropriate times) and has been working with a neurologist as of 2013, and her strength and balance are returning. As the book ends, she offers these words: But with God's help, the love of my family and friends, and lots of hard work, this storm too shall pass. Yes, it will, Delainie.

I give this book *****. 

You can find Delanie's book at Amazon: https://www.amazon.com/Calm-before-Storm-Stroke-Survivors-ebook/dp/B00DRDO9WW/ref=sr_1_14?ie=UTF8&qid=1495995331&sr=8-14&keywords=the+calm+before+the+storm

2. Stroke After Stroke: A Rower's Pilgrimage by Barbara Polan

Barbara thought she was too young to have an ischemic stroke at 52 (she was correct) when she in great physical shape and had a profession--managing editor of a newspaper--she loved. She expected tomorrow to be like today. She masterfully weaves rowing on a gig boat in Gloucester Harbor all through her book about the stroke. Her goal is to be able to row again. She suffered at the time the book was published in 2014 from anosognosia, as defined by a neurologist as "not understanding the extent or significance of one's deficits," i.e. she didn't know her limitations caused by the stroke. Barbara lost the use of the non-dominant side (left side), but she was fortunate in that respect (she is right-handed). Barbara focuses on exercise repetition, and she has tried, among other things, the Eastern practices of Kundalini Yoga, chanting Buddhist 'nam-myo-ho-renge-kyo' for15-minute daily sessions, acupuncture in the ear, psychotherapy, and aquatic therapy. She said she is happy and well-adjusted, although not complacent or accepting of my limitations.

I give this book *****.

You can find Barbara's book at Amazon: https://www.amazon.com/Stroke-After-rowers-pilgrimage-ebook/dp/B00NDF3BH8/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1495999076&sr=1-1&keywords=stroke+after+stroke

3. Love Stroke: Stroke Recovery and One Young Couple's Journey by Kelly and Brad Marsh

The book is actually written by both Kelly and Brad, which I find a fascinating thing in and of itself from a young couple. Kelly, 36, was ill in Cincinnati after she returned from a trip to New Orleans. The both went to the hospital and she was put in the ICU, and when he wanted information about Kelly, a nurse told him, Nothing good happens fast in the ICU. Soon, a doctor confirmed ongoing bleeding in the brain which needed surgery. Her mother was there to help, but Brad, her life-saving point person, kept precise records of her medications, insurance (if filled out incorrectly, it would delay her rehab), doctors, and even the nurses and aides on duty. The book is a moving account of what people can do to help themselves, even after a hemorrhagic stroke, with helpful tips following the chapters. By working hard, she and Brad now have gone on vacations, something Kelly did not think possible early on. Some of the proceeds from the book are going toward the foundation the two of them started--A Stroke Forward, giving young and old stroke survivors, other traumatic brain injury survivors, and their caregivers the resources for their recovery.

I give this book *****.

You can find Kelly and Brad's book at Amazon: https://www.amazon.com/Love-Stroke-Recovery-Couples-Journey-ebook/dp/B01MREGL1A/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1496011684&sr=1-1&keywords=love+stroke

Now, the 3 things I didn't have when I had my stroke:

1. I wasn't married (although my partner of 17 years considered us a married-ish couple) so I didn't have support that was even remotely close to what Delanie, Barbara, and Kelly had with Curtis, Tom, and Brad.

2. They had friends. Most of my friends left me once they saw what they thought would become of me. But I fooled them. I am now walking, albeit with an AFO (ankle-foot orthotic) and a cane, and I am no longer depressed, moody, and weeping. Sure, I get frustrated some times, but doesn't everybody to some extent?

3. They all had family members to help. My two sons lived far away and they visited me as often as their careers would allow. My parents are dead. That is why I'm moving to Portland soon to be near one of my sons as soon as this "medical condition" is cleared up. The foreboding doctor's call came on Friday and that "medical condition" is the subject of my next post. Stay tuned!

This Is a Life Lesson: Cankerish Braces Just a Parable

This post is divided in 3 parts. If I had to judge, the 3rd part is the most important. A little background first. 

Part 1:

When I had my stroke at 4am on April 8, 2009, the paramedics came and I was soon intubated, I found out a few months later. Intubation is a procedure where an endotracheal tube offers an open passage through the upper airway to allow air to pass freely to and from the lungs in order to ventilate the lungs. It helps to be in a coma-like state to not feel the pain.

Endotracheal tubes can be connected to ventilator machines and is often used when patients are critically ill and unconscious, and cannot maintain enough respiratory function to keep breathing on their own.

During endotracheal tube placement, however, one of the dangers is damage to the teeth. So one of my teeth, the upper right canine, was missing, as in knocked out. Also, I had orthodontia before many years ago and the original orthodontist placed a wire behind my bottom teeth so they wouldn't move, and the wire became dislodged in placing the endotracheal tube. I had the upper right canine replaced with a cap, but the lower right first molar eventually came forward in time and my bite was affected.

I studied the tooth, coming forward each year, until I couldn't stand it any longer. That was the only thing I could see in the mirror--that medial drift of the molar which made room for the rest of the teeth, but the hapless lower left first molar was the victim.

The new orthodontist applied the braces and said, "Remember. Nothing hard or crunchy or sticky while you have the braces on." I sat there and started thinking about Vitamin K and Coumadin, a popular blood thinner.


Part 2:

I have to take the same amount of Vitamin K in order to keep my INR (International Normalized Ratio) stable. Vitamin K is responsible for a healthy heart, improvement in bone density, reduced infections, and strong teeth. The INR determines ability to clot and, according to WebMD, "People taking the blood thinner warfarin typically have a target INR of 2.0 to 3.0." Below 2.0, you're aiming to clot; above 3.0, you might bleed. Trust me. I was there, and you don't want either.

I found inrtracker.com and then simply clicked on Vitamin K database to see which foods were allowed, not more than 90 micrograms a day for people 19 and older. This was my regimen, i.e. the same foods I ate every day. I absolutely love cucumbers with the skin still on them (4 thick slices = 30mcg), stalks of celery (1 large = 30mcg),  and blueberries (1 cup = 30mcg).

But I can't eat them now, the cucumber and the celery because they were hard, and especially blueberries getting stuck in the braces because of the outer skin. I felt so defeated that my regimen couldn't exist for a while.

But then, a week later, I researched and while I have the braces, I eat chopped cabbage for cole slaw that's made soft in the mayonnaise dressing (1 cup = 32mcg), ripe "just-melt-in-your-mouth" avocado (just short of 1 cup = 28mcg), and 1 large, soon-to-rotten kiwi (1 = 30mcg), every day. The regimen must continue, for the canker-producing braces, for the must-have Vitamin K, for my anxious sanity.


Part 3:

Until the braces come off in 5 months, I'll go with that regimen every day. Good Lord! It's only 5 months! I'll keep my INR between 2.0 and 3.0, and then I'll go back to the cucumbers, celery, and blueberries once the braces come off.

You see, it isn't the braces alone that's the reason for my telling you the story. It's a parable, an allegory, that applies to everything in life you consider arduous and burdensome. For me, it was assigning other "edible-because-of my braces" foods to my Vitamin K diet with Coumadin. For others, it might be a word you couldn't utter, and now you can speak that word without feeling embarrassed, or a walk around the block that you deemed impossible, and now you can do it twice, or a 12-minute ride on the stationery bike that you thought was the most you could do, and now you can do 55 minutes.

Bottom line? You can do more things faster and efficiently than you're doing presently. Guaranteed. I know because, as a stroke survivor, I was there.

Botox and Stroke Survivors: Does It Really Work?

First off, I have to tell you a story about Botox.

A year after I had my stroke in 2009, I went back to the acute care hospital--Bacharach Institute for Rehabilitation in Pomona, New Jersey--to see a doctor who specialized in spasticity of the limbs or, in my case, my leg. I wrote the book, "The Tales of a Stroke Patient," in part about Bacharach and called Bacharach Rehab X (now that I don't need them anymore, I'll reveal the source), and the insensitivity at times of the health professionals there--doctors, nurses, CNAs. I shouldn't have gone back. But the spasticity was driving me crazy.

If you think about it, you might not get the injection. The word Botox is a combination of botulism and toxin (OnabotulinumtoxinA the active ingredient contained in Botox). Botox comes from a bacteria that is a type of botulism, a type of food poisoning which, if you inadvertently use spoiled beef, can cause you to become very ill if ingested.

Anyway, I heard about Botox (the famous drug used to tackle wrinkles and lines for the insecure Hollywood folks) to also reduce spasticity and I made an appointment with Dr. X who specialized in Botox injections.

I went into the procedure room and the doctor followed. After we greeted each other, I asked him about the side effects.

I thought, C-mon. Botox wasn't to make me look younger. I HAVE A LEG SPASM, FOR CHRIST-SAKE! THEY'RE FUCKING PAINFUL AND ANNOYING! 

The doc said, without missing a beat, "You may die."

I paused and then shrieked, almost simultaneously, "Not today!" and quickly hopped off the table and ran (for a stroke survivor, "ran" is an exaggeration) out of the room, leaving the doc with his needle, the longest needle I've ever seen in my life, already about to inject the "death" serum into moi.

As it turns out, after much recent research, "death" isn't listed on the drug's bottle. Back pain, body aches, difficulty breathing, trouble swallowing, coughing, headache, and fever are among the possible side effects. And death? Never. 

But it should be. The doctor was right. I could die from Botox if it wasn't injected directly in the muscle and went to other parts of my body. Remember? A toxin? But he mocked and scared me, taking advantage of my nervousness.

Public Citizen's (PC) Dr. Sidney Wolfe demanded that the FDA  order a "black-box warning," to require that every patient receive a pamphlet outlining the risk prior to the Botox injection.

"What we're saying is, nobody should be dying of Botox, and they wouldn't be dying if the government and the companies were doing a better job warning people," Wolfe said. (The good doc's message came true. The warning is now on the bottle though PC discovered 16 deaths specifically related to Botox ten years ago. There are most likely more now). 

So insecure people wanting to look younger and more vibrant aside, exactly how does Botox work with brain-injured people? 

A spinal cord injury site said, "A small dose of Botox injected directly into the spastic muscle(s) blocks the acetylcholine so that the muscle can loosen and relax, resulting in increased flexibility and mobility and reduced pain." 

Relief comes to many within three to seven days following an injection, typically lasting three to six months, so injections that are repeated is normally needed. And check to see if the Botox (I mean, ask the doctor to show you) is manufactured by Allergan and not some counterfeit drug company.

Botox is not a cure, and your symptoms will slowly return as the effects of the medication subside.

A recent study at Indiana University found the benefits of Botox in reducing spasticity in the arms and fingers were roughly twice as effective as those who didn't get Botox at all.

Published in The New England Journal of Medicine, half of stroke patients, 126 in number, received injections of 240 units of Botox and half received placebos. The conclusive evidence said the 62% of those who were given Botox injections found relief in their spasticity, while only 27% of the patients taking the placebo reported improvement. Then again, there's mind over matter often taking effect.

The reason that I am thinking about Botox at all is that on this day, 8 years ago, I had my stroke. And I still have spasms, less often, but when I get them, they are mind-altering. 

I'll call for an appointment on Monday, or the week after that, or perhaps never. That sounds about right--never.

Cigarettes, Second-hand Smoke, and Even E-cigarettes (aka Vaporing) Can Give You a Stroke, aka You're Playing With Fire

My mother who didn't work used to smoke a lot, notably in the bathroom where she said smoking would hide the smell of poop. (It didn't, in my opinion). She also smoked for hours on end when she was talking to "Aunt" Eleanor, her best friend. She smoked when she sat outside at night in the 1950s and 60s with the neighbors--the Craigs, the Scotts, the Lynches, the Groffs, the Baldinos--and she smoked when she was preparing every decorative, Betty Crocker-like meal, and a few cigarettes after, because she said cigarettes were relaxing. 

She most likely smoked more when we were at school. She probably smoked a pack or more of cigarettes daily for 45 years, and she didn't get cancer, or emphysema, or high blood pressure, or any--but one--of the things that smoking a pack or more of cigarettes daily for 45 years will give a person. She got a stroke.

Heart disease and stroke are often glopped together because they fall into the category of cardiovascular (heart and blood vessel) diseases (CVDs). 

In the United States, heart disease includes the most common type--coronary heart disease, which is narrowing of the blood vessels that carry blood to the heart. The narrowing can cause chest pain, arrhythmia (when the heart beats irregularly, too fast, or too slow), or heart attack (when blood flow to the heart becomes blocked and a section of the heart muscle is damaged or dies), or heart failure (failure to get the organs to survive because the heart cannot pump enough blood and oxygen).

Similarly, a stroke occurs when a blood vessel in the brain bursts (hemorrhagic stroke, which is the kind I had), causing brain tissue to die, or when the blood supply to the brain is blocked (ischemic stroke). Stroke is one of the leading causes of disability, or even death.

Smoking is one of the major causes of CVD and results in one of every 3 deaths. Smoking can: 

1. Increase the buildup of plaque in blood vessels
2. Cause thickening and narrowing of blood vessels
3. Make blood thick and more likely to clot
4. Raise triglycerides and lower good cholesterol (HDL)

Even if you don't smoke, second-hand smoke, the smoke from a smoker breathed out by burning tobacco products, harms your health, too. 

Breathing secondhand smoke can cause coronary heart disease, including heart attack and stroke. I've already told you about my mother. And my father smoked cigars. I was doomed. Here are the highlights:

1. Each year, second-hand smoke exposure causes more than 8,000 deaths from stroke. 
2. Nonsmokers who breathe second-hand smoke at home or at work increase their risk of developing heart disease by 25–30%. 
3. Second-hand smoke increases the risk for stroke by 20−30%.
4. Even briefly breathing secondhand smoke can damage the lining of blood vessels and cause your blood to dangerously thicken.

The most alarming news in a recent study has found that people using e-cigarettes may be at higher risk of a life-threatening stroke than ordinary cigarette smokers.

Why? Here's how E-cigarettes work. They work off of battery-power that when drawed on, aka inhaled, gets liquid nicotine into an inhalable vapor. The vapor doesn't have the chemicals and tars of addictive burning tobacco, and so e-cigarettes were initially considered safer than cigarettes.

But recent research at Johns Hopkins University used mice who were exposed to e-cigarette vapor for 2 weeks and were found to have greater nerve damage, and their lungs were less capable of fighting off viral and bacterial infections when compared to mice not exposed to the vapor.

One researcher said, “Vaping is not safer than tobacco smoking and may pose a similar, if not higher, risk for stroke severity. Stopping smoking is the single most important step you can take to improve your heart health."

The British Heart Foundation is funding research to find out "whether or not they are as safe as people think.” The devices are targeted at helping people quit smoking cigarettes, but they have been ironically called the “gateway to smoking.”

A study reported in February 2017 said that e-cigarettes may be just as detrimental for your heart as smoking ordinary cigarettes. The researchers observed that vapers were more likely to show signs of two key heart risk factors: increased levels of the hormone adrenaline in the heart and increased oxidative stress (an imbalance between the  oxygen and the body's willingness to detoxify or to repair the resulting damage).

E-cigarettes were introduced around 10 years ago and currently have about 9 million users.

The Centers for Disease Control and Prevention (CDC) reveals a shocking increase in nicotine poisoning incidents, which "can be toxic, even fatal, to children even in small doses." Additionally, inhaled nicotine increases heart rate and blood pressure, one of the major causes of stroke.

The Food and Drug Administration in a remarkable move in May 2016 administered legislation extending federal authority over e-cigarettes. "This action resulted in banning their sale to anyone under 18 and requiring adults under 26 to show photo identification," The New York Times reports.

People reading my post won't necessarily stop smoking just because I said to stop. And they won't necessarily stop smoking just because some health professional told them to stop. People are funny like that. They'd probably only stop smoking when something catastrophic happens to them. Like a stroke, for instance.

NOT BREAKING NEWS: Somewhat Crazy Twice?

Years ago, I was with a friend whose son developed panic disorder from smoking weed. The 22-year-old son had the presence of mind to come to my friend's house. He was lying on the sofa, almost breathless, crying intermittently, begging for help. My friend, who was his father, talked patiently and helped calm him down in two hours. For some of you, maybe talking a mental disorder through will help also, and be enough.  But start at the hospital ER if talking doesn't fix the problem. Mental conditions can be rougher than a stroke! "Head stuff" almost always is. 

Years later, I wondered about mental disorders as related to stroke, and this article popped up. Under the title, Study Links Psychiatric Disorders to Stroke Risk, comes this disheartening news from National Institutes of Health (NIH), published on February 23 of this year:

"Getting care at a hospital for a psychiatric disorder may be linked to a higher risk of stroke in the following weeks and months," new NIH research suggests.

Oh, great, another reason to worry, especially for people who already have depression, anxiety, or post-traumatic stress. Now they might have both--a stroke and one of the aforementioned. Here's what the researchers  found out.

People with mental conditions, stroke or no, possessed a triple threat of stroke--or another stroke--following their stay in the in-and-out ER or for a prolonged stay in hospital bed.
 
The threat of stroke began to decrease after 30 days, but "remained twice as high for at least a year after the ER visit or hospital stay," the researchers discovered.

"We have known for some time that people who have a stroke seem to be at an increased risk for later on developing some sort of psychiatric illness, depression or post-stroke psychosis," said the lead study author, Jonah Zuflacht.
 
Zuflacht went on to say, "But what has been less studied is the inverse of that. Meaning, if you have some sort of psychiatric illness, does it increase the risk for stroke?"


The conclusion? The ER visit or hospitalization for a psychiatric disorder was associated with a higher risk of stroke. The research team said the body might go into overdrive with a "fight-or-flight" stress response, elevating  blood pressure, a leading cause of stroke.
 
"The other possibility,"  Zuflacht added, "is that there are behavioral reasons at work. For example, are these patients not taking the medications they should be taking to prevent a stroke--like their high blood pressure meds--because of their mental illness?"
 
The study from California's Healthcare Cost and Utilization Project analyzed more than 52,000 stroke events--equally divided between men and women--that had taken place between 2007 and 2009.
 
The team discoved that more than 3,300 patients (or 6%) had hospital care for a psychiatric illness at some point in the year leading up to their stroke and were more likely to be female. 

The risk of stroke tripled within the first 15 days after receiving mental health care and dropped slightly afterwards, but was still more than triple the normal rate of having a stroke one month out, with the risk more than double the norm through the 12-month period.

It's not surprising to me, though, and I think it's more than an increase in blood pressure. The psychiatric illnesses may result in other things, too, like increased eating of junk, aka fast, food (http://stroketales.blogspot.com/2013/04/hey-can-fast-food-in-abundance-really.html), going on alcoholic binges (http://stroketales.blogspot.com/2016/09/alcohol-and-stroke-you-may-be-just.html), or elevating your cigarette smokes (post eventually coming), all causes of stroke. 

Caregivers Are Suffering; Stroke Survivors Are Suffering: Who Has It Worse?

The former editor-in-chief of the Philadelphia Daily News was Gil Spencer who said, when I was hired as a columnist, that the only reason writers should write is to be read, whether it's positive or negative to their readers' beliefs. Those words are indelibly inscribed in my brain forever. And I was reminded of them again in this post on Facebook.

On January 17, at 8:07pm, I wrote this in Facebook to the group called "Stroke Caregivers." My words set off a firestorm of anger, confusion, and profanity, all of which are ok.

One person wrote, "GFYS," an acronym I didn't know. So I goggled it, and I found out. (Between you and me, I think GFYS is silly because our anatomies aren't built that way. How can you fuck yourself?) Anyway, read the comments. Some agreed with me. But I removed the names of those who didn't because I don't want bogus lawsuits, (bad spelling and grammar aside), and I deleted more because of repetition. But I left my name in when the response was needed. After you read them, I'll have thoughts of my own.

I wrote, "As a stroke survivor, and from all that I've read in your posts, we BOTH have it tough. But really, you can still dance. Get what I'm saying?"

-------------------------------------------------------------------------------------------------------------------------

Hmm... I usually don't respond to these kinds of posts; but this 'keeping track' of who has it harder has no benefit. I would never say my husband who had a massive stroke that left him paralyzed on his right side, without 40% of his sight, and plagued with severe cases of aphasia and apraxia that leaves him unable to use any expressive speech has it 'better' than me. No more than I would say my daughter with Down syndrome is luckier than me; however, to dismiss the struggles, pain, fear, and responsibilities a caregiver has is hurtful. Can I dance?... Yes, when my body isn't so riddled with pain from caring for my family or when I am not sick from the stress. This talk does no one good. I wouldn't be anywhere than by my husband's side and I am 100% sure he would be by my side if the tables were turned. I am sorry you had a stroke- I wish you didn't. Please be kind to those of us who love and support our survivors.

January 17 at 8:24pm

Sure -- I can dance. When I might actually have five minutes of someone else taking care of my husband - or when I"m not overwhelmed by fear and anxiety from everything that his strokes have changed. His strokes affected me in every single way -- just differently than him. We are all working through these struggles together -- survivors and caregivers.

January 17 at 9:01pm

We heard you loud and clear. Get what I'm saying?

January 17 at 11:50pm

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January 18 at 12:25am

I thought that this group was for caregivers where we can vent freely. And no my husband and I can no longer dance. Ballroom dancing was once our favorite activity.

January 18 at 1:11am

I thought only caregivers were allowed as well. Is there vetting that happens when someone wants to join? Admin?

January 18 at 1:39am

Yes...It is true that I can still dance....but for me...where is the joy of the dance when the only person I want to dance with can not join me :(

January 18 at 6:55am

Wow! Some days I wonder which one of us is worse off!

January 18 at 9:15am

I just reread the informational post by Admin and it does say that Survivors are welcome but that if they are offended by what they read here, other sites may be more appropriate for them.

I think that makes it a little more uncomfortable for us when sharing our honest feelings and try to keep in mind there are Survivors here. 😕

January 18 at 9:56am

 

Well that is one of the hard things about care giving, don't you your self be sick, feel bad, Overwhelmed, Exhausted, Depressed your self, Dead even though you are Alive, the Survivors make it ALL about them, sometimes a little self centered. If no one likes what they see on here don't come on! Just like my self centered husband gets on his sites see something that upsets him and takes it out on Everyone else I tell him STOP READING IT!! I can tell you one thing about care giving after So long and So much of it. You become hard sometimes because you get so Sick and Dam tired!

January 18 at 1:43pm

I can agree to what your saying. My husband has managed to become so manipulitave that is down right scary

January 19 at 9:09

It's not a contest about who has it harder. It's a completely different set of challenges for both. Trying to compare apples and oranges isn't going to help any.

January 18 at 4:21pm

Joyce Hoffman Yes, but it proves my point.
January 25 at 9:25

No it doesn't prove your point at all. It proves that your point is pointless.

January 25 at 10:01am

I'm sorry, what was your point exactly? I'm not trying to be rude, I want to understand what you're saying. Speaking as a third party, I'm watching what my dad's strokes are doing to him, both physically and mentally, and I'm watching what the effects his strokes are having on my mom. I realize that all strokes are different, and that some are not as affected by their strokes as others, who may be extremely incapacitated. My dad isn't as badly affected physically as he could have been, which I'm grateful for. But as his caregiver, my mom is having to deal with a very difficult set of challenges, and it's very hard on her, both physically and emotionally. Please don't say that it's harder on one group than the other. It's not fair to either.

January 25 at 10:15am

I usually just read posts here, and don't comment.

I am so sorry you suffer from a stroke.
But, feel you're out of line here.
Yes, our loved ones are suffering ....
They have no choice in that.
Caregivers CHOOSE to stay.
Choose to give all that they have
to care for, often unappreciated, and sometimes downright abusive, loved ones. Oh, and self-centered loved ones.

Liiike .. coming to a site for Caregivers to be about themselves for five goddamnit minutes of the day, and trying to throw guilt on them

January 25 at 6:44am

Joyce Hoffman You are unhappy as a caregiver? So then why do you do it?

January 25 at 9:27am

She never said unhappy...

February 6 at 4:05pm

Well, that posted before I could make corrections.
I'm sorry..
I should have kept quiet.

January 25 at 6:48am

What cha sorry about? It's the truth. We as caregivers have no clue what the future holds for us when our loved ones come home from the hospital. Not everybody has a positive experience. Hugs and prayers for you and your doing more good than you realize

January 25 at 8:14am

Yes caregivers can dance...but with who? Its a tough life altogether!

January 25 at 8:04am

Joyce Hoffman Maybe I should have said peel potatoes.

January 25 at 9:28am

husband has No movement on left side and cannot get himself up , gets tired and needs help eating ,sooo , After changing all day , bathing , feeding (food has to be blended) , medication ( has to be through g-tube),breathing treatments , brushing teeth , moving every so often, washing ( use a lot of wash clothes and towels and sheets , mopping to keep sanitary and fresh , I think I would rather collapse into bed........and I also take my mom and dad to appointments and cook and clean and look after them and I have a 13 year old ...

February 6 at 4:21pm

 

I have seen this happen z few times on this site, so much so I don't feel I can post about how I'm feeling, that's why I started another group for Partners of stroke survivors where we can feel free to say how we are feeling ask what we may think are silly questions without being judged, I won't post the name of the group but if you would kind to join please send me a personal message with friend request xx

January 25 at 8:18am

Joyce Hoffman Why does someone "caregive" when there are options? Caregiving is only for special people who don't complain about it to other people.

Like · Reply · January 25 at 9:31am

 

Yeh..
GFYS

January 25 at 9:47am

So Joyce what are the other options you are talking about?

January 25 at 12:18pm

I'm"caregiver" to my 30 Yr old daughter

January 25 at 9:34am

If by dance you mean be happy or at least content I say yes! It takes time and for me a relationship w God.

Take it one day at a time. I cried many days and nights but it be came less and less.
I try to find good in lil thing.
Best wishes too you.

February 4 at 9:00am

Yes dance, dance, dance. It's great exercise in any form. I do it with my husband who is in bed and asked him to shake his shoulders because he was getting contracted and I like to see him smile. Dancing is for the soul and everyone should do it whenever they can. Express yourself even if it's a sad dance.

February 4 at 6:28pm
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My post was in a metaphorical context. "You can still dance" shouldn't be taken literally. Some people in this group did. With my right side affected, I could have said lots of other things, like "You can still play the piano" or "You can still clap" or "You can still play golf."

Some pleaded for the Admin to step in and say something. Huh? If Facebook is a populist tool, why?

In response to that person who gave the first reply, don't bet on your spouse if the tables are turned. You may think that, but everybody processes caregiving differently. For example, my partner of 17 years couldn't take it 12 years into the relationship when I had a stroke, and rather than wait for him just to come out and say I should leave, I ultimately left to go to another city, with a driver and me traveling through a snowstorm with icy roads. All the inferences were there, like telling me about the woman a long time ago, a cancer patient, who lived in their house and all the resentment he had by losing his space, or imploring me to watch the movie Amour about two octogenarians where the wife had a stroke and the husband, who was the caregiver, contributed to her demise. I am happy without him. I think he is happy without me. I haven't talked to him in years. But I did him a favor. I don't like to see anybody struggling.

I wasn't keeping a scorecard of who had it worse. But just to be clear, the stroke survivor wins in that category. Some have lost their jobs, their pastimes. Some suffer from uncontrollable spasms, deep depression, mood swings. Strokes are a bitch. 

Mark Twain, amid conjecture, is often given credit this quote: You can be sure of two things in life: death and taxes. (Ugh. I know about the latter). But relating to the former, until you do die, there are options to any situation in terms of caring for a stroke patient. Listen up, caregivers. Take a break by having somebody--a neighbor, a family member--do the caring for a bit. Google your options of alternative places where the stroke patient could go for care permanently. You might be surprised at what you could find. But by no means, don't caregive and resent it. Don't play the victim role. Even though stroke survivors' brains were affected, they know. Trust me. They know.

Plus, caregivers can still dance. That's the bottom line, isn't it?